Wednesday, August 20, 2014

School started a week ago and Katie has missed three days so far. We have two separate issues going on, the first being the tongue issue again. Noooooooooooo!

Last week her tongue started hanging out (this happens about twice a year and we don't know why) and she was just not herself: tired, balance way off, not eating much... it happened to coincide with me not feeling well also. I went to the doctor Wednesday and of course it's allergies for me, so I get better within days, thank you predisone and Z-pak, I love you! I asked my doctor about Katie since no one can ever figure out why this tongue thing happens, and he says yes, it could be allergies and to give her a Zyrtec and see if that helps. So I do and she seems much better, tongue not out so much and I think we have solved this problem! Yippeee! Well, the tongue comes back out but not as often, but she feels better and is more herself. I was so excited to report that we have figured this out, but now I am not sure what to think. Still giving her Children's Zyrtec (sigh).

Onto the next issue. If I was you then I would think that this mommy of Katie might have lost some of her marbles. I am telling the truth when I say that our next issue has happened three times this past week, and I don't know what to do. Because of it Katie is sleeping right now (9:30 am) when she should be at school having fun. I think the real problem might be that she is having too much fun at school. I am blaming the school for this!

So, three times this week this has happened. Katie goes to bed and then around 11 pm she starts laughing in her sleep. I am NOT making this up. If my husband was a blogger he would tell you how sleep deprived he is from his comical kid. She literally is fast asleep belly-laughing! Big loud laughs like she is watching a comedy, it's nuts! I assume she is remembering what a fun day she had and laughing it up. I go in there and wake her up and then she falls back to sleep and it starts up again. This lasts for hours and I don't know what to do. I know there are worse problems to deal with but holy moly, we are so tired the next day.

Poor hubby had to get up at 4:30 to drive four hours this morning and four hours back for work. I am hoping this child gets up soon so I can take her to school for a few hours. I'm thinking that's not going to be the case. I bet she sleeps for another hour at least and then I will be entertaining her for the rest of the day.

It is now 2 pm and my girlie is still snoozing away. I think I'll get her up so she goes to bed tonight!

Contact me at:

Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!